From Kerala, India – Case of Hilar CC
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Hi Kala,
Thank you for your update. It is good to hear that surgery is being scheduled for your mother based on evaluation by her doctors.
Not being a doctor, I am not in a position to offer views on choosing the surgical date. I would imagine the surgeons you are talking to would raise concerns if there would be a benefit to waiting or not waiting.
Usually our folks may seek a second or third opinion when there is a doubt as to whether surgery is possible. In your mother’s case there seems to be willingness to operate. Do you have further concerns that lead you to wonder about seeking additional opinions?
A tissue sample is the usual way to determine if a tumor is benign or malignant. Sometimes it is hard to obtain the needed sample due to the location of the tumor, so doctors make their best judgment looking at other evidence such as scans. Cholangiocarcinoma can be difficult to diagnose because there may be no symptoms in its early stages, and the tissue evidence can be elusive, but from what you write it appears the doctors see enough concerning signs that they want to get your mother into surgery.
Best wishes for a good outcome for your mother from her surgery. This is a big surgery but patients get through it. The doctors may have explained that the liver is the one organ of the human body that regenerates (grows back) after resection surgery, which contributes to good recoveries.
Regards, Mary
Update.
I met three doctors. the Doctor A said, that this is stage II border or early stage III. He suggested to do a surgery at the earliest.
Doctor B and Doctor C from another Hospital. Doctor B said nothing to worry, this could also be IgG4 (which has very similar behavior as CC) and we could easily delay the surgery by couple of weeks since my mom is asymptomatic. Started with Endoscopic ultrasound (EUS) but as they proceeded with EUS, they realized the tumor is inside the bile duct, so they didnt do any biospy. But there were incidental findings along the esophagus. They had incidental finding ‘irregular mucosa’. There were also inflammation along the colon.
In the PET scan, conducted 5 days prior, we didnt notice anything in the esophagus and colon. Doctor C, senior doctor to Doctor B, mentioned also the same that we can wait for 2 weeks and get the surgery done, but this looks like close case of Stage III. He mentioned there is a risk of 5% towards death. He gave us 2 options.
Surgery – Feb 21
Surgery – Feb 26
Question – we feel we should opt for Feb 26, given that my mom is very weak after all the needs of scans/tests and this is a major surgery, needing 45% removal of liver. My mom has some permanent damage to lungs from 35 years back and she is also asthmatic. Given, she is fragile a little rest before the major surgery might help her. What do you all feel? Also, we need to arrange for 6 people with donation of 450 ml blood per person for the surgery.
Question – is there a definite way to tell if the tumor is malignant or benign. My mom lost weight and appetite. Other symptoms are missing. Bilirubin is fine and blood test are fine
Question – How many doctors consultation is considered good?
Thanks!
Hi Kala,
Welcome to our community. I am sorry to hear of your mother’s diagnosis. And thanks to Aniket for offering observations on treatment centers.
Experience with our rare cancer varies a lot from one patient to another. It can move aggressively in some patients which is why patients who can have surgery usually are moved to surgery quickly — from the experiences we see on this board, often within a month or so after doctors determine the cancer is operable. Otherwise, there is a risk the cancer will start spreading, and once this happens, surgery may no longer be an option.
I can offer some general considerations on criteria for choosing a treatment center. Because this cancer is rare, it is good to ask whether the hospital and the doctors your mother would see are experienced with cholangiocarcinoma. You may wish to look for a surgeon with experience with complex liver surgery. In my own case, the surgeon was an experienced member of the hospital’s liver transplant surgical staff. And, as Aniket mentions, how quickly the surgery can be scheduled is also an important consideration.
I hope you are able to find a good treatment center for your mother. Please stay in touch and send any questions our way.
Regards, Mary
Hi Kala,
I am sorry to hear about the diagnosis. However, looking on the bright side, a type II tumor is very much resectable (I am assuming this is The Bismuth-Corlette classification – type II).
Here is my advice for your next steps (and you should act quickly)
-Confirm the diagnosis: You need a second opinion to confirm the diagnosis. The best place to get confidence on diagnosis for Hilar CC is Tata Memorial Hospital, Mumbai. But a word of caution, TMH is very very crowded and it will be hard work for you and your Mom to get through the process. Along with diagnosis they will also tell the course of treatment and you can be sure it will be in your best interest. If it really is a type II tumor – they will recommend surgery. And believe me that is your best option – if this tumor is resectable you should get it removed as soon as possible.
-Go for the surgery with an experienced doctor asap : For the surgery, again one option is TMH, Mumbai – Dr. Srikhande and Dr Goel are both good. But same issues with it being very crowded and not comfortable for the patient and family. But you will be sure of good surgery. Lilavati is an option but my personal experience was not very good with Dr. Jaganaath, although he is very experienced surgeon. They seem to be very money minded and not caring towards the patient. You can try Dr. Jaganaath at Lilavati too, it may have been one off bad experience. But definitely act swiftly and go for surgery.
Feel free to reach out to me if you need any other help.All,
My mom (61 years) has just been diagnosed with late stage II of hilar CC. We have shown to one doctor and there is pressure to perform the surgery at the earliest.
The CT scan in Dec 2018 showed all normal but in Jan 2019 reported “heterogenous enhancing content in the dilated left haptic duct near hilum.’ In just 2 months, it reached stage II. Is this possible? Could the first diagnosis be incorrect?
I am trying to select between AIMS in Kerala or Lilavati in Mumbai. Any advice which hospital is better?
Any comments and recommendation is much appreciated.
Thanks
Kala
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